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ERN-RND | European Reference Network on Rare Neurological Diseases

ERN-RND | European Reference Network on Rare Neurological Diseases

for rare or low prevalence complex diseases

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    • … for rare neurological diseases
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Author: ERN-RND

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Continue reading “Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)”

Posted on August 28, 2020August 13, 2024Categories News 2020

Jump for Dystonia competition in September

Jump for Dystonia competition in September

Continue reading “Jump for Dystonia competition in September”

Posted on August 24, 2020August 13, 2024Categories News 2020

David Marsden Award 2021 – open call for submission

David Marsden Award 2021 – open call for submission

Continue reading “David Marsden Award 2021 – open call for submission”

Posted on August 21, 2020August 13, 2024Categories News 2020

New FTD website by FTD talk team

New FTD website by FTD talk team

Continue reading “New FTD website by FTD talk team”

Posted on August 21, 2020August 13, 2024Categories News 2020

SCA & ARCA Global Online Conference 2020 – Abstract submission

SCA & ARCA Global Online Conference 2020 – Abstract submission

Continue reading “SCA & ARCA Global Online Conference 2020 – Abstract submission”

Posted on July 31, 2020August 13, 2024Categories News 2020

Webinars on Leukodystrophies by ELA Deutschland

Webinars on Leukodystrophies by ELA Deutschland

Continue reading “Webinars on Leukodystrophies by ELA Deutschland”

Posted on July 31, 2020August 13, 2024Categories News 2020

Results of EFNA’s survey on stigma & neurological disorder

Results of EFNA’s survey on stigma & neurological disorder

Continue reading “Results of EFNA’s survey on stigma & neurological disorder”

Posted on July 30, 2020August 13, 2024Categories News 2020

EURORDIS Winter School 2021

EURORDIS Winter School 2021

Continue reading “EURORDIS Winter School 2021”

Posted on July 28, 2020August 13, 2024Categories News 2020

22 July 2020 | World Brain Day

22 July 2020 | World Brain Day

Continue reading “22 July 2020 | World Brain Day”

Posted on July 22, 2020June 5, 2024Categories Past Events, Past Events 2020

Share4Rare – new international patient registry for COVID-19

Share4Rare – new international patient registry for COVID-19

Continue reading “Share4Rare – new international patient registry for COVID-19”

Posted on July 17, 2020August 13, 2024Categories News 2020

2020 CEF Telecom call – eHealth open

2020 CEF Telecom call – eHealth open

Continue reading “2020 CEF Telecom call – eHealth open”

Posted on July 17, 2020August 13, 2024Categories News 2020

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

Posted on July 17, 2020August 13, 2024Categories News 2020

#BrainLifeGoals campaign on World Brain Day 2020

#BrainLifeGoals campaign on World Brain Day 2020

Continue reading “#BrainLifeGoals campaign on World Brain Day 2020”

Posted on July 16, 2020August 13, 2024Categories News 2020

11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

Continue reading “11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience”

Posted on July 15, 2020June 5, 2024Categories Past Events, Past Events 2020

14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

Continue reading “14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes””

Posted on July 14, 2020June 5, 2024Categories Past Events, Past Events 2020

NEW ePAG patient advocate for Leukodystrophies from Germany

NEW ePAG patient advocate for Leukodystrophies from Germany

Continue reading “NEW ePAG patient advocate for Leukodystrophies from Germany”

Posted on July 14, 2020August 13, 2024Categories News 2020

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

Continue reading “9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia””

Posted on July 9, 2020June 5, 2024Categories Past Events, Past Events 2020

Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””

Posted on July 9, 2020August 13, 2024Categories News 2020

ERN-RND July 2020 Newsletter

ERN-RND July 2020 Newsletter

Continue reading “ERN-RND July 2020 Newsletter”

Posted on July 3, 2020August 13, 2024Categories News 2020

SCA & ARCA Global online Conference – registration is open

SCA & ARCA Global online Conference – registration is open

Continue reading “SCA & ARCA Global online Conference – registration is open”

Posted on July 3, 2020August 13, 2024Categories News 2020

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

Continue reading “30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia””

Posted on June 30, 2020June 5, 2024Categories Past Events, Past Events 2020

30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies”

30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies”

Continue reading “30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies””

Posted on June 30, 2020June 5, 2024Categories Past Events, Past Events 2020

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

Continue reading “EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data””

Posted on June 26, 2020August 13, 2024Categories News 2020

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””

Posted on June 19, 2020August 13, 2024Categories News 2020

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

Continue reading “18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation””

Posted on June 18, 2020June 5, 2024Categories Past Events, Past Events 2020

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

Continue reading “18 June 2020 | Webinar “A data strategy for the European Reference Networks””

Posted on June 18, 2020June 5, 2024Categories Past Events, Past Events 2020

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”

Posted on June 18, 2020August 13, 2024Categories News 2020

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”

Posted on June 17, 2020June 5, 2024Categories Past Events, Past Events 2020

16 June 2020 | Webinar “Advancing the rare disease research agenda”

16 June 2020 | Webinar “Advancing the rare disease research agenda”

Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””

Posted on June 16, 2020June 5, 2024Categories Past Events, Past Events 2020

EPNS 2021, abstract submission open

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

Posted on June 11, 2020August 13, 2024Categories News 2020

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

167 Followers 90 Following 184 Posts

European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 days

    Join Till Voigtländer for "Overview and First Results of the JARDIN Project " at our Symposium "European Healthcare for RND Patients", Oct 28 12:00https://f.mtr.cool/mpyqdaaqli.mtr.cool/https://f.mtr.cool/qxrjzcwauh.mtr.cool/qxrjzcwauh
    Abstract: f.mtr.cool/gyblgukxvx
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    One week to go for "European #Healthcare for RND Patients" - our Scientific #Symposium on October 28! Join us and register now for online participation - #free of charge: us02web.zoom.us/webinar/regi...

    Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...
  • Get to this post

    European Academy of Neurology @ean.org 7 days

    Join Europe’s leading minds in neuroscience, innovation, and policy for the #EBRAINSSummit2025 – Transforming Brain Research and Medicine – live in Brussels on 8-11 December!

    🔗 Register here: summit2025.ebrains.eu
  • Get to this post

    ERDERA @erdera.bsky.social 1 week

    What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38
  • Get to this post

    ERDERA @erdera.bsky.social 1 week

    Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
    🔗 Access the report: https://loom.ly/zcpVZfg
    👉 Find out more: https://loom.ly/afsfGWA
    #ERDERA #RareDiseases
  • Get to this post

    European Academy of Neurology @ean.org 2 weeks

    Start your journey toward becoming a certified Ambassador for Neurology and Brain Health!🧠

    Applications are NOW OPEN for the third edition of the EAN Advocacy Training Programme!

    ➡️More info on the programme, eligibility, and application: buff.ly/CxmJCr3
  • Get to this post

    ERDERA @erdera.bsky.social 2 weeks

    🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
    #RareDiseases #GenomicData #1MGenomes

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ERN-RND European Reference Network for Rare Neurological Diseases

Our mission

ERN-RND aims to support rare neurological patients in Europe in getting a timely and appropriate diagnosis, treatment and care.

ERNs

ERN-RND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. For more information about the ERNs and the EU Health strategy, please visit https://ec.europa.eu/health/ern_en

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